Testing

I feel like it’s been ages since I’ve written anything on this blog. It crashed. I had to get it restored. It took a long time. It was a pain and painful. I realized once again that I need help in computer related areas of my life. I wish computers were a thing when I was growing up. I remember being in school and a teacher saying that one day everyone would have a computer in their house. I remember thinking that sounded far-fetched, but look at us now. I almost feel like I’m living in an episode of the Jetsons. I just wish I had the amazing dog walking sidewalk and Jane Jetson’s maid.

Welcome to my brain. Focus, Dawn.

Yesterday Zack had a stomagram. It was part of the recommendations Boston sent to our doctors here as next steps to rule some things out. Zack had been working hard in therapy to get ready for the test and boy could we tell! Thanks, Dr. Caitlin!

Zack’s GI and his pediatrician worked hard to make things low stress for him as well. And guess what? Zack was a ROCK STAR! I believe his GI doctor’s exact words were, “Who is this child?” I think Angry Badger left the country because there was no procrastinating, no fussing, no crying — just a compliant and happy child. I do not want to overthink it. I’m just so incredibly grateful to everyone who has worked so hard to help Zack overcome his incredible fear and anxiety. Even if it only lasts for this one day, I’m so proud of Zack.

The other amazing thing that happened was that his pediatrician arranged for immunology to come down to the fluoroscopy suite to give Zack and his GI doctor their flu shots together. When I say that I believe Zack has the best medical team, I am not exaggerating. Shots normally freak Zack out and require two people to administer them. Not this time. Zack stuck his arm out and barely flinched when the needle went into his arm. Seriously, I am so amazed. Zack did have a little bit of medication to help take the edge off his anxiety, but he really shocked us all with how laid back and compliant he was.

Because I am pretty sure my family will want to know what stomagram is, I thought I’d give you my description of what happens. Zack’s stomagram was a dye test that was performed by inserting a catheter into Zack’s stoma and injecting contrast into his intestines. While this was happening, x-rays were taken in real time (like a video) to watch how the fluid flowed. The purpose of this specific test for Zack was to look for strictures and areas of dilation in the intestines. It can be a bit uncomfortable, but Zack seemed oblivious. Unbelievable…

It appears that the stricture we saw previously is no longer there. This is awesome news because I believe (I’m never quite sure if I’m right) that this means we are one step closer to being able to try some new medicines to try and control Zack’s output. One medication that has been mentioned is octreotide. I don’t know the name of the other one, but Zack’s doctor believes it may be an orphan drug? And for all I know, there may be many more to try. However, the presence of strictures makes the likelihood of those medications obstructing Zack much higher and nobody wants that.

Zack will also have an abdominal ultrasound in a few days to rule out a hernia. Ultrasounds are easy for Zack, so I am not worried about him freaking out over that. I think that will be the last test for now. Zack’s doctor(s) and I are still debating the need for more manometry testing. Some people with the ACTG-2 gene mutation can have waxing and waning symptoms. BUT even if his colon had some action, there is no way we would ever reconnect Zack given how sick he became last time we tried it. In addition, his last two manometry tests showed very little and no motility. On the other hand, I understand that the more information we get on Zack’s intestines the more we will be able to understand his specific disease. I’ll save that discussion for another day.

Now that we are back home, I have questions. Is a stricture able to resolve on its own? Could that really have been a snapshot of Zack’s intermittent obstructions? He also has a stricture higher up closer to his stomach, but this test did not go up that far. Do we care about that one? Is it small enough not to worry about? You would think these questions would occur to me when Zack’s doctor is around, but they don’t.

Zack was actually tired on our drive home and almost fell asleep. That literally never happens unless he is really sick. I’m guessing that the little bit of medication he had on board helped with that situation. It was a good day all around. I love good news. More than that, I love that we were able to see Zack feel comfortable in a medical situation for the first time in years.

Hug your babies!

~Dawn

Zack’s Summer Bucket List

Time for summer vacation with a HEALTHY boy!  Yes, I wrote that.  No, I am not worried about jinxing Zack.  I mean, we still have to track his sodium every other week, but that is a piece of cake.

This is the first summer we have had in recent history with the very real possibility of making plans and having them actually happen!  I had Zack make a list of things he would like to do over the next few months.  I’ll share them with you in a bit, but first an update on Zack’s medical stuff.

Zack’s sodium level continues to be detectable with an odd off week every now and then.  His stoma is behaving, mostly…We are watching a rather new development.  While Zack is not prolapsing, his stoma is swelling with exertion and is painful again.  Zack has begun assuming his pain position when this happens and also asks for Motrin more regularly.  When his stoma swells, his output slows way down.  Happily, his output starts back up again once he actually relaxes.  I know I always say his output is too high and now I am complaining about it slowing down.  The problem is that his output is artificially slowing.  It is slowing because his stoma is swollen and blocking the flow, not because it is actually doing what we need it to do.  Jim and I are not overly concerned yet, but we are definitely keeping an eye on the situation.

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The famous pain pose.

In addition to Zack’s medical update, I have a school update.  Zack had a big neuropsychology appointment at the Kennedy Krieger Institute today.  Zack underwent 5 hours of testing, and we received some interesting news.  Zack’s cognitive ability is significantly higher than his performance in school.  The doctor (PhD, not MD) believes that his cognitive ability is strong enough to be able to graduate from high school, but he will continue to require special attention.  We also know he’s not crazy, we had him tested.  I do not have the official written report yet, just what Jim and I wrote down and our memory of what was said.  Because of that, I am afraid to write more about it as I might get the terminology wrong or say something incorrectly.  You will just have to stay tuned for a more precise update later.

Now, about that summer list.  I love my Zack.  His list makes me giggle.  One week into summer and he has already accomplished almost everything on his list.  I might have to help him think of more fun things to do.  I keep saying this is the summer of Zack!

  1. Get socks without holes.  Um, child, if you put your shoes on before going outside as directed, your socks would last a LOT longer.  Just sayin’.  The boy now has many pairs of socks without holes.
  2. IMG_1621Learn to swim and go to Aunt Becky’s to swim lots of times. Technically we are still working on this, but he is in swim lessons so I count that as being done.  All he has left is to learn to breathe.  You know, the most important part of being able to be in the pool without your parents.
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  3. Play tennis.  Tennis lessons began last week and Zack actually hit the ball several times –  in the same lesson.  That is a huge improvement from last year.  AND he actually paid attention to his coach during listening time.  Score!  Sadly, no pictures.
  4. Go bowling.  We learned that Zack is a bit OCD about color coordinating bowling balls on the racks.  Who knew?IMG_5915
  5. Play WiiU.  Bribery for good behavior wins again here.  Zack got a new game for behaving exceptionally well today during his hours long testing.  That is pretty hard to do when you have a pretty good case of ADHD and your meds wear off.
  6. Go to the library.  Zack signed up for the summer reading program and is eagerly reading to earn tickets for raffle items at our library.  Bribery really works for this kid.
  7. Get a puppy.  Well….now here is one that we have not yet accomplished.  BUT since Zack is doing so well medically, we are actually in the process of figuring out the puppy situation for either the fall or spring.

There you have it folks.  I am enjoying posting happy things.  I would really like to make that a habit.  Are you listening stoma?  I am enjoying having my boys home for the summer.  Most of all, I am enjoying having a healthy Zack and hoping it continues!

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Hug your babies!

~ Dawn

Re-feeding Trial

Things are going pretty well around here.  Actually, they are going better than they have been in a very long time.  Zack is gaining weight and growing.  That is pretty amazing.  Zack is hungry.  That is new.  Zack is sleeping through the night more often.  That is beyond blissful.  Zack is happy.  That is my boy.

Today we had our regular Monday sodium check at the hospital.  It Is holding steady at around 50 mEq/L which is a good thing.  His output continues to be higher than it should be but is also unpredictable.  It would be nice to get that a little lower, but clearly things are improving.  Even better, Zack has made it almost three months without prolapsing.

Our next step is to do a re-feeding trial with Zack.  Basically, we get to put stool from his bag back into his body through his mucous fistula which leads to his colon.  Then we get to see what happens.  There are more steps involved, but I’ll spare you the nitty-gritty.

That does not sound too awful.  Other than sticking a tube into his body through an opening in his belly and messing with stool, it should not be too bad.  We have done worse things over these past few years.  So why am I soooooooooooooo not looking forward to this?  Seriously, I have no desire to do this.  My anxiety about re-feeding beyond ridiculous and really not at all like me.

I spent some time contemplating this today.  I think that the idea of putting stool back into Zack’s colon again is bringing back memories of how sick he was after his reconnection.  I am dreading waiting to see if he will distend again and if he will have pain again.  I knew things were hard after his surgery, but I did not realize how strong my emotions would be a year and a half later.  Part of me is saying, “Suck it up, Buttercup.”  The other part of me is saying, “Please don’t make us do this!”

Happily, I feel like at least I understand where the emotion is coming from now.  Zack’s doctor told him today that we have to do the test so that we can get closer to being done with all of this.  He is right, of course, and I think I was the one who needed to hear the pep talk.

At our visit to the doctor today, we practiced getting the tube into his belly.  Zack did OK.  Not great, but better than he has done for other procedures.  There were tears.  He tried to resist….well, he did resist…but we finally got it done.  All of the work he does with our social worker on Monday mornings seems to be helping as Angry Badger has not made an appearance lately.  He’s been lurking, but Zack has kept him at bay.  Zack told me later that having the tube in his belly was not too bad, it just scared him.  He also said that his belly hurt with the water inside.  Now that he knows what it feels like he said he could be braver next time.  Maybe I can learn from him?

We also learned that some of Zack’s test results came back.  So far everything is normal.  I was a little disappointed, but not really surprised.  We are still waiting for a few more things to come back…fingers crossed they find something.

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My Little Lego Lover

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I LOVE watching Zack build his Lego creations by himself.

In other news, my running coach, Dave Griffin, writes a column for our local paper the Carroll County Times.  A few weeks ago Dave talked to me about the possibility of writing a piece about how running helps me cope with the stress of having a chronically ill child.  He read most/all of my blog posts (bless him) and knew a lot about Zack and how much I rely on exercise to help me deal with the craziness that is my life at times.  If you are interested you can read it here in the Carroll County Times or here if you are on Facebook.

Until next time….

~ Dawn

 

Zack’s New Plan

Now that we are back home and getting used to being in a routine again, I finally have time to update this site.  Zack was very excited to come home and giggled when he climbed into his bed.  He said he missed his pillows and his cozy sheets.  I felt the same exact way.  To make our first night home even better, Zack slept through the night for the first time in months.  I am pretty sure I heard rejoicing in the heavens…or that just might have been me.

While Zack was in the hospital, the doctors told us that it was time to start looking at some more obscure things.  I guess doctors have a saying that goes something like, “Don’t go looking for zebras.”  Meaning, don’t go looking for a complicated illness when a more common one is most likely.  The attending pediatrician on service this past week is a GI as well.  We have known him since 2013 and have great respect for him.  During rounds he told us that it is time to start treating Zack like an albino zebra. He said that Zack has been “medically brittle” for a long time and on the brink of disaster for months.  It is time to start digging deeper to see if we can come up with some reasons for Zack’s super high output and sodium losses.

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Big brother helping Zack be brave for his PICC dressing change.

Walter Reed and Cincinnati shared testing information so that we do not have to repeat a bunch of tests.  The doctors here came up with some new things they would like to investigate.  One thing they are considering is the possibility that Zack’s intestines are not processing sugars correctly.  This is all new to me, so it is quite possible that I am getting things wrong here.  They want to make sure his pancreas is functioning well and a few other things.  They said many things.  My brain was tired.  I cannot remember it all.  I need a secretary.

One of their plans was to have Zack undergo another endoscopy while he was in the hospital.  Sadly, he had a pretty good cough and anesthesia is never a good idea when you have a cough.  We will schedule that in the next few weeks.  During the scope they will take tissue samples from a variety of places.  I know they will be looking closely at the villi to see how certain enzymes are being processed.  They want to magnify tissue to many times greater than a normal biopsy to see the arrangement of cells.  They also talked about getting something from his bile ducts.  Again, I need a secretary.  If I come back in a few weeks and write something completely different, you can assume I had this wrong…but I am fairly confident at least some of it is correct.

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Zack’s high output also causes him to lose a lot of sodium.  I always knew low sodium (hyponatremia) could be an issue, but I did not realize just how dangerous it can be.  Because Z’s levels have been low for so long, we spent a lot of time in the hospital getting his levels back to normal.  In an effort to keep them normal and prevent such big fluid losses, his doctors have suggested putting him on CeraLyte 70 as his primary form of liquid during the day.  CeraLyte is a oral hydration therapy and comes in several different strengths.  In addition to using CeraLyte 70 for daily hydration, they sent us home with “rescue doses” of CeraLyte 90 to give through his g-tube when his output is really high until we can get him in for labs.  From their literature:  CeraLyte 90 is for severe diarrhea and dehydration–where fluid losses are high–such as in cholera or with short bowel or ileostomy.  Who knew this was a thing?  Why didn’t anyone know about it before?  So many questions…

All of that sounded great when Zack was in the hospital.  And then we came home and actually got the product.  Our home health company could only send the natural flavor at first and let me tell you…it is not something you can sell to a kid as something fun to drink.  While we can give it through his g-tube, Zack likes to drink and if he cannot have anything else all day it isn’t going to work.  Actually, he can have 6 ounces of another liquid, but have you seen ever measured 6 ounces?  I’m pretty sure we will have a mutiny on our hands.  We will see his GI on Monday and talk about the plan and see if we can turn it into an executable one.

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Zack and Aslan.  Quite possibly the most awesome dog in the world.  By the way…Zack is 49″ tall, so that is one big puppy!

The good news is that Zack’s sodium levels were all in the normal range when we left the hospital on Tuesday.  That was the first time that has happened in months.  He feels great and is back in school.  Speaking of school, Zack received his new laptop today and, even better, they trained me on how to use it.  I am pretty sure I needed the training more than Zack.  He is so excited to have his own computer.  He has already mastered the Kurzweil reading program and is enjoying The Lion, The Witch and The Wardrobe.

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Trying out his new laptop.

As you can see, things are getting back to normal around here.  We are so grateful for all of the people who helped us get through the past two weeks.  To all of our awesome neighbors, thank you for helping Jim keep Zack stable and for transporting him to the hospital.  To all of our awesome hospital friends, thank you for taking such good care of Zack and of me.  To our friends and family, thank you for checking on us, visiting us and bringing us food.  You all rock!

Hug your babies!

~ Dawn

Manometry Day

It has been a crazy few days for Zack.  Yesterday was so busy and LONG that I did not have a chance to write an update.  Now I have so much to say that I am pretty sure I’ll forget lots of important things and equally sure I’ll ramble.  Forgive me, please.

Yesterday began bright and early with manometry testing. All was fine until the introduction of medication.  After about an hour of testing, the manometry team put an antibiotic (erythromycin) into his IV which caused him to become flushed and feel sick.  The medication is used to stimulate the small bowel.  After another hour, Zack was allowed to eat pancakes and boy was he a happy child!  He ate them so fast he gave himself a stomach ache, but I think he thought it was worth it.

The test continued for another hour or so and then the nurse added another medication to Zack’s IV.  I do not remember the name of it, but Zack felt a lot of discomfort.  We were told it was also for the small bowel.  I am not sure if the first drug did not produce the waves they were looking for or if it is standard procedure.  Zack has never had it before.

At long last it was time for the large intestine medication to be given.  Zack’s colon did not respond how they had hoped, so they administered another dose. The medication causes lots of cramping.  Zack was not a happy camper.

Sadly, during the administration of this last dose, Zachary’s stoma prolapsed.  We knew it was only a matter of time, but really?  At least we were in the hospital.  The strange part was that Zack was on his back in bed.  It was not as large as some of his other prolapses, but it would not reduce on its own.  Seven hours later and several attempts at reducing it by the surgery Fellow, that pesky stoma finally went back in…..and then there was quite an outpouring of “stuff” from the stoma. Try not to think too much about that.  Let’s just say that our nurse last night deserves a serious raise.

We also met with the GI team on service to discuss a number of tests they wanted to perform.  They checked Zack for viruses, parasites, cystic fibrosis, malabsorption issues, nutritional status and a number of other blood work type things.  Because some of the things they were testing for were potentially contagious, Zack was placed in isolation.  That was fine yesterday when he felt bad, but today it was hard as Z felt pretty well and wanted to go to the playroom.  It is the highlight of the hospital after all.

Because Zack has had “Angry Badger” issues, we met with a pediatric psychologist to discuss the situation.  Her assessment was that Zack is suffering from medical trauma and could benefit from counseling.  That was fun to hear, but not really surprising.  One good thing that came out of her evaluation is that he is “a well adjusted child in all other areas” and only has anxiety regarding medical procedures.  It was actually one of the best parts for me of being here.  She gave us some great tips and we started trying to incorporate them right away.

At five o’clock this morning Zack needed to have labs drawn. His IV was not drawing back so he had to have a needle stick.  Five o’clock in the morning and needles are usually a recipe for disaster, but I am happy to say that Zack held it together and did a great job.  He was still scared, but was able to work through it with breathing and distraction and talking and a wee bit of crying.  He did so well that his nurse gave him a Lego police truck.  Talk about positive reinforcement!  So positive in fact that he has been awake ever since….

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Around lunch time, Zack’s GI here in Cincinnati came in to discuss the manometry results.  We learned that Zack’s colon had no propogating waves at all until right above the anastomosis site.  That means his colon does not function from the beginning of the large intestine until right above where he was reconnected. It begins to function above the anastomosis for a very little bit and then stops again until it reaches his rectum which functions well.

We also learned that his high output is a result of secretory diarrhea.  I am not sure if I completely understand this yet, but for some reason his intestines secrete too much fluid.  The doctors are trying to get a handle on this because it needs to be under control before we do anything else.  That meant more blood work, a change in formula and antibiotics. Because his IV would not draw blood today a new IV had to be placed.  Despite his great effort this morning, this new IV was just too much for him to handle today. The Vascular Access Team decided that since his IV still worked in his left arm they would leave it in place and put a new one in his right arm to be used for blood draws.  They were wonderful in granting Zack’s request to leave his hands free for playing Wii.  His tests for infectious things came back negative, so he was finally allowed to head back to the playroom.  Behold the two IV wonder:

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The last person we met with today was the dietician.  We were thrilled to learn that Zack is now in the 30th percentile for weight!  Everyone seemed pleased overall with his growth and would like to see him bulk up even more before his next surgery….and there will be more surgery.

We expect that Zack will be discharged tomorrow.  Zack is counting on it, so I hope nothing else happens.  The GI on service this week is not super comfortable with Zack leaving with his prolapsing issues, but Jim and I feel like we have done this for so long we can handle it.  The only hesitation I have is how long it took Zack’s stoma to go back in last night, but if that were to happen here or in Maryland we would do the same things and home is always the better place to be.

We believe Zack will be having a colectomy (removing most of his colon) in the next few weeks.  Zack’s surgeon is currently in China so we have not made any concrete decisions regarding which surgery to perform. We do know that she is planning to add Zack to her schedule the week after Thanksgiving.  That is really soon!

Whew.  I hope I covered everything.  Time is almost up here in the playroom.  That is my signal to get off this thing and say good night.  Fingers crossed that we can bust out of here tomorrow.

Hug your babies!

~ Dawn

 

 

 

 

Zack’s Fun Run

Hopefully from my lack of posts of late you have realized that Zack is living the dream.  He is feeling great.  His stoma is surprising all of us and still holding.  Life is going pretty well for our little guy.  Wait….did I really just write that?  Please do not wake me from this delightful dream!

This past weekend, my sister and I ran in the Army 10 miler in DC.  I had been training for this race since June and was super excited to run.  Running is stress relief for me.  Even though I have a love/hate relationship with running, it has served me well these past two years.  As much as I enjoyed running that race, nothing compared with today.

One year ago Zack was so sick he was confined to the sofa most of the day.  He had little energy, was pale, his belly hurt and things were not going well.  Today, however, was the kind of day that brings tears to our parental eyes.  Zack’s school had its second annual Fun Run.  It is a fundraiser for the school and kids raise money based on the number of laps they run.  The school goes all out and everyone has lots of fun.

Jim and I told Zack we would come and watch this event.  He asked if I would help him run.  Jim and I figured he would do a few laps and be done.  Zack told us he wanted to complete 16 laps (4 miles).  For each lap completed, the students received a jelly bracelet and Zack thought they were looking mighty nice.  We told him that he had a great goal and off we went.

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I am happy, amazed, and beyond proud to report that Zachary Penrod completed 3 3/4 miles and received 15 bracelets!  Can you believe that?  I was so impressed.  He ran, walked, sat down to rest, got back up and did it again.  He had such determination on his face.  When I asked if he wanted to stop (when he was hanging off of me), he looked at me and told me, “No way!  I am doing 16 laps!”  That’s my boy.  So, Zack and I ran.  There are a few times in your child’s life when you see their character shine through.  Today was one of those days.  This run reminded me of his last two years. Zack rarely lets life get him down.  Despite how hard it was for him to run, he never gave up.  I love that about him!

IMG_4792In other news, we have dates for Cincinnati.  Zack will have testing the first week of November.  As long as his stoma holds, we are not going to have any surgery.  Fingers crossed!

~ Dawn

 

Motility Testing

Monday we checked into the hospital for a few days to check Zack’s colonic motility and to see if the doctors could find any abnormal things inside his colon.  We have done the motility test twice before but received different results each time.  Now that Zack’s ileostomy is close to prolapsing again, it is obvious that an ileostomy is not the best option for him. It is time to come up with a better solution.  We need to know if there is any chance his colon would work if reconnected.

Zack was really happy on Monday.  It is rare for him to be admitted while feeling well. He loves visiting with the nurses and staff on the pediatric ward at our hospital and he was is high spirits giving hugs and talking to all of his “friends”.

He lost that happy feeling late Monday night when several attempts to start his IV failed.  When he woke up on Tuesday, the reality of anesthesia clouded his happy countenance. Things went downhill behavior wise from there.  Zack’s incentive (bribe) for good behavior was the Lego City Dirt Bike Transporter.  He was looking forward to building it after his procedure and had grand plans for it.  Sadly, Angry Badger made an appearance.  His Lego set is now in Daddy’s closet until the next procedure when he will have the chance to earn it once again.  Bad behavior just cannot be rewarded no matter how sad that little face looks.  Stand strong parents!

IMG_4647Zack’s warrior headband did little to cheer our cherub.

Jim and I are sad that Zack is so out of control anticipating anesthesia.  We worked a little bit with our Child Life specialist today with some medical puppets and dolls.  Zack was able to place an IV in the puppet’s arm and talk a little about how much he does not like them.  One of our favorite nurses of all time gave us some suggestions from things he had been studying regarding children who have had many medical procedures and become fearful.  We are hopeful we will find something that helps calm his fears because they are getting worse.

Zack headed off for his colonoscopy and colonic catheter placement around noon. Zack’s doctor said the colonoscopy was good with nothing abnormal found.  The catheter or tube contained a lot of sensors that measured the pressure or contractions in his colon at rest and with meals and medical stimulation.  It was clipped (somehow) to the beginning of his large intestine and then brought out of his body through his bottom and taped to his leg.  The procedure did not take long and he was back in the PACU after about an hour and a half.  It took a long time for him to wake up from the anesthesia, but there were no complications this time and everything went according to plan.  I like that.  Zack was not able to eat or drink for the rest of the day and had to stay in bed.  That was not a problem as he did not really want to move.

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Zack, Jim and one of our nurses with matching tattoos.  Zack also put one on his belly as a surprise for his doctor to find.

This morning, the colonic manometry started when Zack woke up.  Zack’s doctor said this gave them a baseline measurement.  After about thirty minutes, he was able to eat pancakes and drink!  He downed an entire 32 ounce G2 Gatorade in a matter of minutes and was a happy, happy child.  Once he finished eating, the machine continued recording until his doctor returned to give him a medication through the tube to stimulate his intestinal nerves.  This medication worked!  We were able to see propagating waves on the monitor.  Propagating waves are a good thing.  In January, there were none, zero, nada.

Now the never ending questions remain.  First, why does he have decent motility when he has an ileostomy and his colon is at rest?  Did his septic symptoms skew the test last time?  Does his colon stop working properly when it contains stool?  Was the colon so dilated that the sensors couldn’t sense anything?  Second, what are the least invasive ways to get answers?  One idea is to give Zack a cecostomy.  This would allow us to flush Zack’s colon from above, but can only work if we can figure out why nothing comes out of his bottom. Can we try re-feeding his colon (it’s a real thing…adding ostomy output into cecostomy to see how colon reacts to stool) before reconnecting him again?  You get the idea.  Lots of questions.  Unfortunately, we may not have much time to figure this out.

Today, however, we are happy to be home.  Zack was discharged at 12:30 which gave us plenty of time to play.  It was a beautiful, sunny day.  Zack was thrilled to be outside even if all of the kids in the neighborhood were gone.

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Daddy getting the IV tape off.

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Happy to be home!

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Frisbee with Dad.

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Almost caught it!

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Even had time for a bike ride!

We are looking forward to enjoying the last four days of summer vacation.  We are hoping to have a little pool time, a barbecue with friends and lots of play time before then.  We are pretty excited that we have good news to report.  Hoping to continue that trend for a while!

Tonight we are excited to sleep in our own beds, no machines, no noises, no lights.  It is very exciting!

~ Dawn

Zack’s Cure For The Summertime Blues

We have had a lot going on around here this past month and I am happy to report that most of it has been good.  Once we got Zack over the first three weeks of post surgery recovery, things started looking up.

Zack has been able to swim again and even learned to put his head under and move around.  I would not quite call it swimming.  He is currently in that dangerous zone where he “thinks” he can swim, but if left alone he would drown.  At the beginning of summer Zack listed learning to swim as one of his top goals.  I am hopeful that if the weather stays warm just a little longer Zack will reach that goal.

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Zack swimming to Aunt Becky with cousin Ronnie heading the cheering section. 

(Had to screen shot a video because I wasn’t fast enough to do both.)

Another goal Zack had for the summer was to play outside each day.  Even when his stomach felt bad, he still asked to be outside.  We’ve been keeping the activity level a bit lower to try to keep that stoma in, but have managed to find some fun activities.

Last week Zack and his brothers went paddle boating on a lake near our house. Somehow, after living here for almost four years, we had never been to this park.  A rousing game of tag was played on the play structure which was shaded by beautiful oak trees. The older boys kept their eyes closed to even the playing field and nobody got hurt.  Even better, as far as I know, everyone had a great time. All good things.

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Loving the paddle boat!

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Yesterday Zack finally had an appointment with his Developmental Pediatrician.  We only see her about once a year, but have had to reschedule several times because of stoma stuff.  It was a good visit even if my happy boy was not very happy or polite (I am beginning to see a pattern here).

Zack’s doctor did some basic testing to see how he is doing academically.  We talked about some things to try differently at school this year.  Specifically, we discussed the use of assistive technology.  His fine motor skills are still a work in progress.  While that is not a bad thing, it takes him a very long time to write legibly.  It takes him longer to write one simple sentence than for the rest of his peers to write an entire paragraph. His doctor said that she feels now is the time to introduce using a computer for his class work.  I think that is a good idea as well.

We also touched on his doctor’s belief that all of Zack’s “unique” medical issues are genetic in nature.  I agree with her.  There are just too many strange things about our guy that nobody can explain.  It would be nice to figure it all out, but it does not change anything for Zack at the moment.  He is going to have a great life regardless.

Our visit to the Developmental Pediatrician was the beginning of our week of doctor visits.  On Thursday Zack gets to have another contrast enema to check on his obstruction at his anastomosis (reconnection site).  There is some debate as to whether or not there is an obstruction, and we need to know what’s happening down there before we make a decision on what to do next.

Next week Zack will be inpatient for a few days to redo his manometry testing.  If you have been following Zack’s story at all you may remember that he had some septic symptoms after his last test.  Zack’s doctors believe this could have skewed the results.  Of course, for the last test, Zack did not have an ileostomy.  He has an ileostomy now, which means his colon has been resting for the last five months.  I am not quite sure how we will be able to compare the tests, but that is why we have doctors who have been studying this stuff for years to help us.

Zack’s ileostomy has not yet prolapsed.  We are pleasantly surprised and a little bit shocked by this.  However, we feel like it is only a matter of time before this happens AGAIN.  His stoma is much bigger when Zack is up than when he is lying down.  It is strange that Zack cannot have an ileostomy that does not prolapse.  We do not have a good answer for why that happens.  One theory proposed by his surgeon here is that his lack of scar tissue contributes to the prolapsing.  This is one reason I have been unsettled about the best next step for Zack.  But that is a story for another day…

I’ll post an update next week while Zack is in the hospital.  Hopefully all good things.

Hug your babies!

~Dawn

Healing – Two Weeks Post-op

Sometimes it is hard to gauge just how difficult surgery can be on Zack’s body.  He is usually cheerful and energetic.  This time our little monkey was acting better IN the hospital than at home. I think sometimes we underestimate pain control.  We have great pain control in the hospital, but at home we rely on Motrin and Tylenol.  Last week Zack could have used a little more help in the pain department.  His staples were really bothering him and his wafer would NOT stay on which caused his skin to hurt… a lot.  He was really just a mess.  Who can blame him?

This is how our guy looked for most of the week:

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There he sat, on the sofa, for hours a day.  Doesn’t he look pathetic?  He started to perk towards the end of the week, but only once his dad got home from work.

Because of our wafer issues, Zack’s surgeon took his staples out a few days earlier than planned.  THANK GOODNESS!  Getting the staples out helped Zack feel more comfortable moving around.  Our ostomy nurses helped me brainstorm new ways to keep that darn wafer stuck on his body and we finally found a winning combination of things that worked.

For those of you who know what the heck I’m talking about, we used gobs of stoma paste around the center of his wafer as well as lots on his staple line to fill in the gaps.  We kept Zack lying down for five minutes before allowing him to get up and then we put his tightest stoma belt on for a few hours to help the paste cement.  This combination of things allowed his wafer to stick for a whole day!  That meant Zack actually slept through the night.  Sleeping through the night has helped everyone have a better attitude, not just Zack. Not that I would ever be grumpy…..

I think we are now over the worst of the post-surgery yuck.  Zack has not been asking for pain medicine as often.  He has several good hours during the day where he plays pretty normally.  He does tire out pretty quickly, but we are only 14 days out from some pretty big surgery.

Zack is excited because he can now take an actual bath and go swimming again!  He is still restricted in his activities for another two weeks, but he was able to go swimming at his BFF’s pool today (Z seriously calls his buddy that). Getting back to normal is good for Zack’s spirits.

After swimming with is buddy, Zack came home and rested for a few hours before begging to go outside and play with the neighbors.  We live on a cul-de-sac that has about ten boys Zack’s age.  Today was one of the hottest days of the year.  Zack is at more of a risk for dehydration than other kids because of his high ostomy output.  So what did we decide?  We decided to let Zack off house arrest and play outside. Parenting at its best.  Feel free to take notes.

The kids in the neighborhood are all so protective of and kind to Zack.  They were playing a game they invented that was part lacrosse, part soccer.  Although the game looked really fun, it was definitely not on the approved activity list for Z.  The boys thought a little bit and then decided that Zack should be the referee and help keep time. Zack was thrilled!

Here is Zack giving the ready, set, play signal:

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After a few minutes of standing in the sun, Zack realized he needed a break and continued his job as an armchair referee:

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We are so glad that Zack was able to play today, but we are still super cautious about his activities.  Jim and I are worried about his new stoma.  There is a significant difference in the size of his stoma between lying down and standing up.  It is not yet prolapsing, but we do not think it will be long until we are back to that again.  Sigh.

Zack lost five pounds while in the hospital.  His cute little chub is gone and he is back to being pretty darn skinny.  He was 50 pounds when he was admitted and right now he is 45 pounds.  Happily, his appetite is starting to return.  We are also pushing the formula feeds at the moment to try to get him back to his 50 pound mark.  Our doctors tell us good nutrition helps aid healing and we are all about that!

We are still waiting for our phone conference with all of Zack’s doctors.  We have made our own “plan” for what we are going to do if it prolapses before we are able to talk to everyone.  Zack is currently scheduled for more testing at the end of August, you know, right when school starts… because that is how we do things around here.  Actually, to be fair, he was originally scheduled to have the tests the first week of August, but that had to be rescheduled due to his most recent surgery.  Jim and I are doubtful the stoma will hold on that long.  Hopefully we are wrong….

Hug your babies!

~ Dawn

Some Results

I know you will be surprised to learn that patience is not my thing.  I mean I CAN be patient, it just does not come naturally to me, especially when I am waiting for medical results.  I would really like them to be immediate and favorable.  I am frequently disappointed.  Happily, we only had to wait twelve days for the results of Zack’s latest testing.

Jim and I met with Zack’s doctor without Zack last week.  It was nice to be able to fully concentrate on what we were being told. We learned that Zack’s motility was abnormal.  I mean…we kinda already knew that after watching the manometry machine for two days.  The bigger question is why did Zack have normal motility in July before being reattached but not now that he is reconnected?  Z’s doctor gave us several theories.  He was a little sick after the colonoscopy.  Sometimes that can cause the intestines to slow down.  His colon is also pretty dilated, so perhaps the peristaltic waves are ineffective and hard for the machine to detect.  He had no movement the first and second day after eating, but after Dulcolax was administered the second day, some weak propagating waves were seen.  They were not as strong as they should have been, but his doctor seemed encouraged to see them there.  We still have a lot of questions……

In addition to the motility issue, Zack’s barium enema showed an obstruction just above his anastomosis (reattachment site).  We are not sure what is causing the obstruction, but it does explain why Zack is having so much trouble pooping at the moment.

Zack’s biopsies were non-specific.  I take that to mean that they did not show much.  His eosinophil level was a bit elevated. His stool sample showed a normal calprotectin level.  An elevated calprotectin level indicates inflammation of the GI tract and is found in diseases like Crohn’s and Ulcerative Colitis.  I do not think we ever thought those diseases were under consideration for Zack, but it is always good to rule things out.

Because Zack has had a number of strange things happen, Z’s doctor has said that we need to consider that we are missing something.  The way his intestines prolapsed last year with the ileostomy was not normal.  When he had surgery to tack his intestines to his abdominal wall to stop the prolapses, he tore through 10 internal sutures…not normal.  His body reacted like a Hirschprung’s body after his reattachment.  He does not have Hirschprung’s.  Not normal.  The eosinophilic ganglionitis showing up in full thickness biopsies taken in two different places in his intestines at two different hospitals.  Not normal.  His rectum did not look or feel normal to his surgeon.  You get the idea.

Z’s doctor and surgeon have spoken and come up with a new plan.  Zack has started on a course of prednisone to see if his colon gets back to normal size.  If he really does have eosinophilic ganglionitis, the steroids should make a difference.  We are hoping that the steroids will help make the obstruction better.  I am still not really sure about some of this, so do not be surprised if I change my story.

Zack’s surgeon is calling us this week to talk to us as well.  If the prednisone does not help, Zack may have to have is anastomosis revised.  In English, this means that he would have another surgery at the site of his reattachment between his rectum and descending colon to fix the obstruction.  Obviously, we are rooting for the steroids!

While I like to think Jim and I do a pretty good job of holding it together in the midst of our life stressors, my sisters thought it might be nice for Jim and me to have some alone time.  Our son, Jake, is away on a missions trip to Guatemala for a week and the “Aunts” said they were coming to get Zack.  We gave them a crash course on Z’s feeding tube, mixing formula, how to rub Z’s tummy when it hurts and how to give him his meds.  They blessed us with 48 hours of much-needed time alone.  I cannot remember the last time Jim and I were alone in the house together.  Really.  We were able to sleep though the night, watch movies, clean the basement (it HAD to be done) and remember that we actually do like each other.  It was a nice retreat from the craziness of our life.

Zack came home today.  He said he wanted to live with his Aunts forever because they spoil him.  He asked why Jim and I do not spoil him.. I think we will need to spend some time reprogramming our guy.   I’m glad he has such great relatives.

While he was being “spoiled” he had his first dose of steroids.  So far so good.  No crazy side effects to report.  One side effect that we would be happy to see is an increase in appetite.  We are hopeful that the steroids will help Zack’s body and that we will see an improvement in his pain, motility and that they help make his pooping more normal.  Always hopeful…

I leave you with some pictures of Zack.  I let him choose the photos for you.  Whenever Z has to go into the hospital for procedures, he gets to pick a Lego.  He then gets to hold it until he makes it through anesthesia without losing his mind.  If he accomplishes that, when he wakes up he gets to build the Lego set….or his dad does…but he gets to take credit for it.

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A Star Wars fighter.

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A birthday present, not a hospital present.  We are NOT that nice, remember?

starwarsThe inside of his Imperial Star Destroyer.  He loves it.

Zack is always listening to our conversations so we were not surprised that he heard that he might have to have his anastomosis revised.  He did not freak out, he just calmly looked at us and announced that he would like the Millennium Falcon if he needs surgery again.  He’s on to us.  We are in trouble…time to start praying those steroids are our miracle drug!  Or, I suppose, we could just say no and call the Aunts.  I am liking that idea….

~ Dawn ..